Gastroparesis: Sometimes you know more than your doctor

(American) society still seems to have this thing where doctors are revered and assumed to know this amazing amount of knowledge about things no one else understands (except on tv). It started hundreds of years ago with licensing and membership requirements to be able to restrict people who wanted to be doctors and it still hangs on… even though medical care in this country isn’t as good as other similar countries. Obviously the licensing is important and needs to be required. It offers protection. Not many people understand they must be honest and open with their doctors. Not many people understand that doctors should be willing to respect their patients. Doctors are not omnipotent gods.

All that said, people with chronic illnesses can end up knowing more than their doctors… or anyone they interact with who is a “medical professional”. Yesterday I explained gastroparesis to two different people in a medical field. The first was a dentist… I can completely understand a dentist not knowing about a GI disease but it’s still weird to have to explain. (See above.)

The second person was a dietician. I explained what my GI tests had found and in front of me she turned around to her computer and googled Gastroparesis. She printed out information from one site and then went over it with me. She kept on even after I realized it was a print out I had at home that I’d read through. She ignored the things I said like:

Information on gastroparesis varies between sources.
There’s only so much my doctor can help with because some things I just have to figure out on my own.
I needed lifestyle changes, not just diet changes.
Gastroparesis makes exercises difficult and problems with pain and fatigue make exercise harder.

Mostly she was happy about my weight loss. The weight loss I’d achieved because the gastroparesis limits how many calories I can consume at one sitting/in a day. One she was so happy was because she has to follow FDA guidelines. Guidelines that are for healthy people people not like me… people without chronic diseases that have no cure and aren’t caused by obesity. The only thing the dietician really helped me with yesterday was a little bit more understanding on how to approach monitoring my calorie intake – and how much fat, protein and carbs I need. Now that I think about it the only reason why I want to see her again is to see her response based on my additional weight loss…. I still can’t eat as much as my recommended calorie count for a day, so my weight loss will continue. (Hopefully I won’t add it back on later.)

The medical field in this country needs to change, but because our government’s views on medical care access are based on how much people deserve instead of recognizing that medical care access is a human right, we still have very far to go. This should also include changing the relationship between doctor and patient. People need to learn to advocate for themselves, which isn’t the same as arguing with their doctor that WebMD knows more. We need to learn to value our health and know that sometimes lifestyle changes are necessary.

Control

I don’t have a job and cannot have much income at all for the next three years if I want my mountain of student loans to be discharged for disability. I’m not able to fill my days with volunteering since I’m not working because I do not have the physical or mental energy I once had a few years ago. I also have to be aware of what/who I’m in contact with. If I get sick from a sick person, I could be sick for a very long time.

I have to plan out a lot of my activities – usually everything outside of the house – so that I still have energy for anything afterward. There is very little safe and healthy for me to eat outside of food that has been prepared at home. The one thing I know I can get from any convenience store that is safe for me is potato chips…. except right now while this acid reflux is really bad. My diet is very restricted and there are few food or drink “indulgences” that I get to partake in. In the morning, I usually eat so I can take my medicine, not because I’m hungry.

A few weeks ago I received my (first) denial letter for my SSDI application. (Apparently the DoE can discharge over $110,000 in student loan debt easier than Social Security can give out monthly checks.)

I knit, peruse the internet, or play ithing games, almost every day. I feed the cats. I remember my regular meals but sometimes forget to eat in between those times. I have problems with anxiety and depression, in part because of my health problems and in part because of all the bad experiences I’ve had in medical settings….and in part because I feel like I have very little control. On bad days I do little more than stare at my ithing, watch Netflix, eat and nap. On good days I can handle computer games and more than one or two household chores. Sometimes it’ll be two weeks before I leave the house besides for the grocery store or a doctor appointment. Going to the movies is really hard on my body and brain because of sitting still for so long and mentally processing everything from the movie. I think that must be why I like re-watching movies/tv shows.

When I was a grad student I wanted to make my life into something meaningful. I wanted to be able to help people by working in a non-profit organization. I can’t do that. It’s not possible. Someone/something/the universe/the fates/a higher power/my genes took that away from me. What I live now doesn’t feel very meaningful.

Somehow I need to find a way to focus on the little things I do have control over and one big thing I do have control. I choose to continue to fight to the dark thoughts that tell me it would be easier just to give up and stop it all. Except, that living shouldn’t be a battle.

Looking forward and being sick

Or, why I’ve decided to apply for disability.

My health has improved in the past few months, since it started getting worse(r) at the beginning of the year. Much of my week to week, or month to month, life often seems to be taking two steps forward and one step back. (Or one step forward and two steps back.) It’s depressing and frustrating.

In the last month or so I reached an important milestone. I choose to think of it as a milestone. I stopped looking at how I feel compared to how I felt. (I need to make sure my neurologist understand this.) Instead, I’ve started (trying) to look forward. How do I feel compared to how I should feel to be able to do things like work full time, write a book, work in the yard again, or volunteer again.

Ignoring, for a moment, the unknown aspect of all my multiple health problems, I think it will be years before I can attempt many things in life that I used to take for granted — without much planning, preparation, and expectations of doing nothing but resting before or after. The unknown aspect of my health problems means that I don’t know if I’ll be staying in bed – or going back to bed – tomorrow until tomorrow.

The goal that I put first, after taking care of myself, is being able to write a book AND publish it. This is something I can do on my own schedule, around doctor appointments, migraines, and naps. This is not something that pays bills. If I was to go back to work full time, I’d lose access to doctors because I wouldn’t have the time to get to appointments. I’d also lose access to hobbies and increase my stress. All of these things would negatively affect my health by causing more issues with pain and fatigue – among other things. More pain means (more) narcotics. It would also mean I’m more likely to get sick. Getting sick means more doctor appointments and more medicine.

Regardless of what my long term goals happen to be, I now understand that I have to think in terms of years. Half a year, a whole year, two years, etc. Getting sick happened over years, not weeks or months. It’s going to take longer than that to improve my endurance and find my new normal. I’ll probably never be like how I was in graduate school. (That was only 3-4 years ago!)

This is not something that pays student loans or doctors or medical bills that are in collections. It all sounds scary, but at least I can look forward and think about the future now without panicking (much).

the sick life of a full time patient

If you are not familiar with the idea of the Spoon Theory, developed by a blogger with a chronic disease, but want to know more about how people with chronic disease(s) feel on a daily basis, you can find the explanation here. You can also read on to see why I have problems with this explanation of living with chronic disease. However, tt is important to understand this concept as it was originally presented because I think it’s important to see how the author came up with the idea “on the spot” in a restaurant when she was basically “put on the spot.”

The Spoon Theory is just the tip of the iceberg for people living with chronic disease – especially for people with more than one chronic disease. Chronic disease is often autoimmune, and so it’s not uncommon for someone to have more than one chronic (autoimmune disease).

I identified with this idea of the Spoon Theory when I initially started being diagnosed with chronic illness, such as my fibromyalgia. Initially it seemed to fit. But then I started reading more about my health, understanding more about my health, and over the weeks and months I began to realize it doesn’t always apply. It cannot account for the unpredictability that is life when you have a (seemingly invisible) chronic disease. The Spoon Theory is too black and white. Life isn’t as easy is black and white. Nothing is that clear and concise, except maybe death, taxes, and medical bills. Life is gray, and chronic disease is even grayer than gray. The Spoon Theory even makes living life with chronic disease easier than it actually is.

The main problem with The Spoon Theory is that it does not take into account so many other things that are part of the life of being a full time sick person. I cannot go to the doctor, be given a medicine and expect to feel better in seven to ten days. More than one doctor has told me that he or she will help me, but has no idea how long it will take. First, right now, I am a full time patient. One of the primary reasons I cannot currently work is because I see so many doctors, too often. There’s not enough time to travel to and from appointments, keep my own medical records up to date and organized, pick up new medicines at the pharmacy and work a full time job on top of everything else every single adult person would like to be able to do with his or her life. (What’s a vacation?)

Second, it does not account for the shame and guilt a person with chronic disease, and chronic pain and/or fatigue feels when they have to ask for help from their friend, family member, or care giver – again. I’m lucky; I’m married and my husband is extremely understanding and reliable. He helps me out. I wish I could help him out as much as he helps me out. Also, it does not take into account the anxiety and stress involved in seeing a new doctor either in a new specialty for a new “problem” or having to find a new doctor because a doctor refused you care. Or, the fear of going to the emergency room because something is wrong but you don’t quite know what.

Third, it does not account for the mental fatigue and internal anguish caused by having your identity stripped away or otherwise altered against your will. Once I was a full time graduate student and intern at a local nonprofit organization. I was learning, and helping, hoping to be able to aid people further after I achieved my degree. Now? Sometimes I’m too tired to figure out what to make for lunch, let alone figure out what household chore needs completed next.

Fourth, The Spoon Theory suggests a normal versus abnormal mentality. Everyone has bad days. Everyone knows what it’s like to have a bad night of sleep. Everyone can take a nap and regain some lost energy. The Spoon Theory focuses on physical energy and physical fatigue. The Spoon Theory is useful in explaining how people with chronic disease have reduced energy and increased fatigue. But, beyond that the analogy loses some of its power because of the normal (them) versus abnomal (us) mentality – because it’s explaining how the sick people are different from the health people. Perhaps we should do more than focus on perceived outward differences.

Possibly the biggest problem with the Spoon Theory, is that it does not account for the invisible nature of many chronic diseases and the judgement that someone with reduced physical and or cognitive abilities deals with on a regular basis. I don’t look sick. However, I might act high, confused, or otherwise just “dumb” because of chronic pain, chronic fatigue, or side effects from medicines – including but not limited to pain medicine. I am sick.*

And one more thing, the Spoon Theory does not account for the fact that having one or more chronic diseases and living with chronic pain and or chronic fatigue changes how a person approaches life. It also changes how other people approach you, when you are the sick one.

I think I no longer identify as a spoonie,** at least not primarily. I’m not quite sure what I do identify as right now either. I feel like a full time patient, full time kitty mom (we do have 4 cats after all), a part time knitter, a part time writer, and a part time wife.

I live the sick life. At times the sick life is lonely and scary, full of unknowns and scary monsters. Other times, the sick life is just like, well, life.

 

_____

*I don’t think the word “sick” as it’s defined in the English language is specific enough to cover all aspects of sickness. We need more words.

**spoonie definitions vary depending on who you talk to or where you read.

Being sick sucks when you’re already ill

I think the English language does not have enough words to explain things like sickness, illness, disease, infection, and the difference between chronic and acute. To me being sick is acute, like having an infection. Illness is chronic, like disease. So, when I have a kidney infection that means I’m sick on top of being ill since I have 2 chronic illnesses. (Or 3, does asthma count as a chronic illness?)

Same goes for pain. Acute pain and chronic pain are two entirely different animals too.

I suspect some people also only consider people sick if they are contagious. All of my problems are practically invisible right now.

The worst part? My chronic illnesses cause cognitive problems and being sick saps my energy even more.

I just want to be able to work on one of my writing projects but it’s been so long I can’t remember what I had planned, where I was, or where I was headed. Writers say write every day, well, I’d like to meet a writer with a chronic illness who still writes every day, regardless. Some days I’m lucky I can function.

Drowning

I need to see if I can get some of the crap out of my head. I have two neurologists.

Right now, my medical history includes:*

  • depression**
  • anxiety
  • diverticulosis (asymptomatic)
  • autoimmune problem causing histamine intolerance (case study with an immunologist)
  • regular pollen and dust allergies – except they are more severe than “normal”
  • food allergies
  • food sensitivities – no gluten, no MSG, the list goes on and on
  • asthma
  • migraines
  • fibromyalgia
  • bulging disc in my lumbar – L4/L5 I think

I can now also add:

  • lesions in my brain and cervical spine
  • degenerative disc disease – no idea how bad
  • slight Scoliosis – middle of the back – I guess it’s minor?

In another 4 to 8 weeks I might also be adding multiple sclerosis to this lovely list. Technically, the neurologist’s blood tests and/or lumbar puncture could find other problems. It wouldn’t be the first time. Multiple sclerosis has it’s own list of problems which might explain some of the other constant problems I have which aren’t in the list like:

  • chronic pain
  • chronic fatigue
  • chronic sleep problems
  • cognitive/focus problems
  • muscle pain
  • needing supplements and regular medicines multiple times a day

I know, logically, that I should not feel like I’m drowning. I should not be eaten up by anxiety and depression in varying ways on varying days…. However, it’s hard to find the little things that keep me breathing in among all the other things that are scary. I know I should take care of myself.

I know that technically nothing in my body has changed – except that maybe the pain I experience at different levels every day is a sign of a larger problem. Except, now I know I’m likely to have back pain/problems/issues for the rest of my life.

What’s spending a few more months in discomfort and pain, feeling like your body has betrayed you – when you’ve already spent years feeling that way?

If it’s not multiple sclerosis – which can be treated – I have no idea where I’m going from here.

 

 

*Oh look, this distraught Virgo is making bullet pointed lists.

**I have no thoughts of suicide.

The Eliminating Scary Medical Stuff game

In roughly the last 12 months I have played this game more times than someone should have to do it in their lifetime. Bodies are weird. I’m beginning to think humans never made it out of the beta program. It’s also demonstrated just how horrible health care insurance is in this country….which is scary since having insurance is still better than having none.

Last summer I went through a rheumatologist’s battery of tests and ended up a diagnosis of fibromyalgia. It’s not Lupus! This diagnosis did actually make sense for a number of until then unexplainable symptoms and I reacted to like all or almost all of the fibromyalgia tender points.

Last summer I also went through a cardiologist’s battery of tests. This ended in a “there’s nothing wrong with your heart.” I also found out that red-40 food dye can give me tachycardia bad enough to make a cardiologist nurse insist on doing an EKG.

Last fall, I think, I started to develop a horrible rash that almost nothing would make feel better that I dealt with into the spring. I’m pretty sure now that was from the gluten intolerance I didn’t quite figure out until late spring/early summer.

Then I saw the immunologist to restart my allergy workup. He sent me to a GI doctor to check on those symptoms. The GI doctor performed an endoscopy and colonoscopy and found lots of inflammation and way too many polyps for someone my age. Also tested for celiac and that was negative. He sent me to genetic counseling – I think the genetic counselor or testing center lost my information and I only recently found the paperwork so I can consider calling – which may or may not be the old phone number from before her office moved. (The test takes 12 weeks to complete.) Additional followup and discussion with immunologist led me to try the low histamine diet for histamine intolerance. This diet has improved many symptoms.

I’ve also found out little things, like I’m chronically low on vitamin D and starting the 50,000 IU/week dose of vitamin D improved a number of my symptoms. Doing things like introducing magnesium and CoQ10 have also helped immensely.

Now, I’ve seen a neurologist about my migraines and the MRI of my brain and cervical spine found lesions in my brain and neck. This is a possible sign of multiple sclerosis. (Hey! I spelled it right on the first try!) Today I see another neurologist for an MS workup. I don’t know if this will lead to another set of MRIs this time with contrast, a lumbar puncture, and or anything else.

This makes – between last May and today – less than 12 months technically – 4 times I will have played the game of running through tests with a specialist to make sure I do not have a horrible, scary, or debilitating disease. The only good thing about fibromyalgia is that your body does not deteriorate.

Just once in my life, I’d like my body to be easy and show no signs of a scary disease – or have signs of something that’s simple and easy to fix. Breaking bell curves can be exhausting. I’m taking an academic article about MCAD to the neurologist appointment this afternoon.

*edit for more typos I missed in the first edit.

Writing and Chronic Illness

I have this thing floating around in the back of my head. I’m trying to figure it out and give it some flesh and blood. What if fibromyalgia is what happens in my life that means I finally take the steps to become a full time writer? (Thankfully I have a supportive spouse in this equation.)

It’s weird because while wondering if my chronic illness is going to make it easier for me to change my life I’m also afraid my chronic illness has trapped me and I won’t be able to change my life.

The trick, I think, is to find a place to start. I’ve realized that writing is like mental exercise. I’ve started exercising at 10 minutes every day or every few days. We’ll play it by ear. I can do the same thing with my writing. To start. Blog posts don’t necessarily count.

I also recently read on the internet that on days you cannot write, you read about writing, or think about writing. I’m hoping this book will help too.

In theory, if the CoQ10 I’m now on seems to be helping my fibro fog. Exercise will also help. So, I just have to think about this like it’s a journey. You have to start someplace.